News
Start the Conversation: From Patient to Physician
Health and Well Being, Living with a Bleeding Disorder
To end Bleeding Disorders Awareness Month and celebrate National Doctors Day, Dr. Aaron Chen shares his story of how living with thalassemia…
New Medscape Activity to Help Institutions Offer Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
NHF is pleased to announce that its collaboration with Medscape continues with a new accredited educational activity designed to help healthcare providers…
New Survey Spotlights Ongoing Concerns for People with Hemophilia B
Health and Well Being, Living with a Bleeding Disorder
Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a…
What You Need to Know About Hemochromatosis
Industry News & Research, Living with a Bleeding Disorder
This blood disorder affects more than 1 million Americans and has no cure, but there are effective treatments. Hemochromatosis, also known as…
WFH Gene Therapy Registry Goes Live
Industry News & Research, Living with a Bleeding Disorder
The new registry will help monitor the long-term safety and efficacy of hemophilia gene therapies in people around the world. The World…
Common Questions About von Willebrand Disease (VWD)
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
It’s the most prevalent, yet lesser known, bleeding disorder. Here’s what you need to know about VWD. by: Michael Hickey Of the…
Can People with Bleeding Disorders Take Blood Thinners?
Industry News & Research, Living with a Bleeding Disorder
by: Donna Behen Blood Safety Millions of Americans who have or are at high risk for heart disease regularly take anti-platelet drugs…
Telehealth for the Bleeding Disorders Community
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Telemedicine provided vital access to blood and bleeding disorders care during the pandemic. What does the future hold for this technology? Remote…
Safeguarding an Essential Treatment for Heavy Periods – What Contraception Bans Would Mean for the Bleeding Disorders Community.
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
In June, when the Supreme Court overturned Roe v. Wade and ended the constitutional right to abortion, women’s health advocates around the…
What Men with Hemophilia Need to Know About Diabetes
Health and Well Being, Living with a Bleeding Disorder
Recent studies have found that older men with hemophilia have a higher risk of diabetes than those without the bleeding disorder. An…
Mental Health Crisis for Teens
Health and Well Being, Living with a Bleeding Disorder
Adolescents in the blood disorders community who have mental health problems often face added barriers to serious behavioral health care. The last…
Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”
Advocacy & Legislation, Living with a Bleeding Disorder
The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…
Pfizer and Sangamo Therapeutics Announce Phase 3 Trial of Investigational Gene Therapy for Hemophilia A Has Re-Opened Recruitment September 23, 2022 Share on facebook Share on twitter Share on linkedin
Industry News & Research, Living with a Bleeding Disorder
Pfizer and Sangamo Therapeutics announced that the Phase 3 AFFINE study evaluating giroctocogene fitelparvovec, an investigational gene therapy for patients with moderately…
HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B
Industry News & Research, Living with a Bleeding Disorder
Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for…
FDA Approves First Gene Therapy to Treat Adults with Hemophilia B
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is…
Additional Health Risks for Men with Hemophilia
Living with a Bleeding Disorder, Men with Bleeding Disorders
Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…
New Document to Help Residential Substance Use Disorder Placement for Individuals with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
The document includes best practices for HTC providers in accessing residential substance use disorder treatment Historically, many residential substance use disorder (SUD)…
Pain Management for Adults
Living with a Bleeding Disorder, Pain Management
Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode…
Comprehensive Pain Management: The Old and the New
Health and Well Being, Living with a Bleeding Disorder
In this video, pain management specialist, Dr. Kim Mauer of Oregon Health and Science University, provides an overview of current treatments available…
Record-Keeping Tips for the Bleeding Disorders Community
Health and Well Being, Living with a Bleeding Disorder
by: Michael Hickey Keeping an accurate treatment log is an essential part of managing a bleeding disorder. Here’s how you can do…
Statement from Patient Groups in Response to Court Ruling on Cost-Free Coverage of Preventive Health Services
Industry News & Research, Living with a Bleeding Disorder
HFA and 25 other patient groups issued the following statement in response to Wednesday’s court ruling in Braidwood v. Becerra (a lawsuit formerly known…
von Willebrand Disease (VWD) and Iron Deficiecy – Speaker: Bethany Samuelson, M.D.
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
In this video, Dr. Bethany Samuelson Bannow, of Oregon Health & Science University, discusses the role of iron in the body, the…
Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!
Living with a Bleeding Disorder
What is Hemocraft ™? In partnership with the Entrepreneurial Game Studio at Drexel University, the National Hemophilia Foundation, and members of the…
Gallery Captures Hemophilia Lives: Photographer Rankin Captures The Humanity in People with Hemophilia
Health and Well Being, Living with a Bleeding Disorder
“Portraits of Progress” is a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that…